Sharing really is caring

I really believe that sharing is caring, but the thought was brought back into my mind this morning during a Tourette's fit. They're usually directly linked to my stress level, which, with various anxiety disorders means it varies, for no reason and with no warning. Though it is usually correlated to my actual stress level. It usually goes like this:

Stress level:

1 - I don't know yet haha but pacing, definitely pacing... I never stop pacing
2 - The occasional twitch of the shoulders and straightening of clothing (the clothing thing always exists, like having clean hands and such)
3 -
4 -
5 - 3 to 5 range from stuttering, neck craining, hand twitches, foot tapping, guttural noises and clicks and the like. I usually sing during these times in order to focus on what I'm doing. In times like these I feel blessed I learned so many Earth based Pagan songs. They help focus my mind on positive things.
6 -
7 -
8 - High stress times I stutter badly and it always accompanies neck craining: sometimes to the point of such pain that I cry out. The hand body twitches become more exaggerated and the foot tapping becomes leg spasms and jerks. Yes, I admit here and now that I have spasmed into the Thriller dance on one occasion. On high pain days from the fibro, which I'll get to later, the spasms are in my back and they can take me down in an instant in complete agony.
9 -
10 - These days are all of the above with fibro nerve flashes which leave me utterly nonfunctional.

My wife and my kids know all of this because they've lived it, the poor things, as it's come about. I wasn't always this way. The onset of Fibromyalgia exacerbated what my Neurologist called "undiagnosed childhood Tourette's syndrome"  which made sense as I've been a finger drummer for as long as I can remember. To anyone on the outside it may seem odd and I know it makes situations uncomfortable so as I shared with my immediate family, I share with you my family at large.

Allow me to digress; I shared all of this in order to set the frame work for the sharing of my walk through Fibromyalgia. Also understand that I have arthritis and my knees are bone on bone, and I have some band disorder my Rheumatologist explained but I don't understand which means my hips ache and pop out of socket frequently. So knowing all of this I'll explain my Fibromyalgia. I say my because it's a host of disorders which plague different people differently. For instance it heightened the already existing Tourettete's and OCD (CDO) and brought new anxieties. My pain level is always parallel to stress changes and changes in barometric pressure. There are eighteen nerve points recognized as very sensitive with fibro and you can have any number of them active. I have all eighteen points active at varying levels of sensativity which correlate to changes in stress, movement, overall health, mental state (which is a real Bugger) and others. They can also just heighten for no reason. Mine are as follows:


1 - My back (4 lower back and 2 upper back at the base of my neck) and my right knee are sensitive though I'm rarely at this pain level with a cognitive mind. Mild headache. I creak like the rigging on an old sailing ship. Extreme discomfort as though I just can't get comfortable.
2 - Back, knees, headache at the base of my neck.
3 -
4 -
5 - Again from 3 to 5: Back (all points from this point forward), knees, elbows, ankles, feet (at the soles), hands, headache complete head mild migraine symptoms, clouded thinking, IBS, lethargy, loss of appetite, muscle spasms in my back and sometimes in my leg, The leg ones I walk out because I pace, the back ones are all day long twitches. If I sit down for too long they lock up and cause the points in my back to hit a 10 in pain. I have sat through one full movie with my family in four years.
6 -
7 -
8 - You know the drill: Extreme lethargy I'd liken to my worst bout of the flu (when I had pneumonia) extreme body and joint pain (my hands are swollen clubs), my knees feel like they're filled with broken glass, the foot pain is like a hot coal on the pad while the foot remains extremely cold with swollen joints, migraine headache, clouded thinking, grumpy, Anxiety bouts with shrieks at loud noises and flinches at sudden movements, IBS from the very bowels of hell,
9 -
10 - They blur into one and it's all of the above with inescapable agony that writhing in the fetal position won't comfort. Nothing helps; there is no place dark enough, soft enough, warm enough, cool enough... if I could be suspended in air I couldn't find comfort and I feel like I know how the Earth must feel moments before magma becomes lava.

So I tell my family and close friends what my pain level is at. I do so because I have no sores, no open wounds which are dressed, no outward signs really other than my permanently dark eyes to alert anyone that I am sick. I am sick.

I am sick.

It has taken me so long to simply admit that. I have fears of hypochondria so I am very stubborn about being sick. I have been sick for as long as I can remember. I have grown a strong dislike of doctors and western medicine in general. I has taken me a long time to become medicated again though my life is MUCH better being so.  I was told at my last doctors visit that I am maxed out on Lyrica and Cymbalta; lovely. I have to fight what I assume (yes I assume) is the doctors view that I'm just after some pain medicine like percocet or something. I don't want that. I really dislike the feeling of those pain meds. I don't drink to the point of feeling "off" and I don't like that no matter what I take, prescription pain meds, I feel that way. I am a medical marijuana patient. I have been for two years. The amount of pain relief is directly in my hands. The type of relief is under my control as well. By using different types I directly address what I hurting or wrong. I can remain functional and believe me it has saved my marriage because I'm no peach to live with. My wife is a Saint for putting up with me, truly.

I wake up groggy and I go to bed wide awake. I pace all day so that when I go to bed I'm exhausted and I'll sleep as still as possible because I don't want to ruin Rose's sleep. I still sleep restlessly and the points on my back have caused us to cuddle much less. I really miss that physical contact. To explain my back; have you ever had a broken or bad tooth? Where the root was exposed? Where just the slightest breath inward was felt and it could surge to a burning pain at the lightest touch? It's like my lower back is a mouth full of broken teeth. The Lyrica and Cymbalta keep the pain at about a high discomfort level. My family know where to hug me safely, others I keep the pain within; it's worth it for the physical contact and exchange of love. After the hug, which usually ends with a pat on the back, I smile and excuse myself to go walk off the pain. I will not miss out on a hug, and if you're reading this and thinking of hugging me less, even one hug, please please don't. Please don't withhold, I am a hugger. 

I meditate in the morning to offset the lost sleep. I try to meditate a couple hours a day between sitting Shinay and walking Shinay. I open my shrine in the morning which consists of chants which set my intention in the right direction, offerings of saffron water and candles and incense when I have it. I center myself through this process. I get the coffee going and get my family off for their day. I ask them every day "Did you get enough sleep? Did you get enough to eat? Are you going to have a good day?" We play fun music. My youngest son likes Stevie Wonder's "Sir Duke" especially and I love the way he sings it in the morning. After they're off I will come home and medicate and walk out the cramps and spasms. About Noon I'll be able to get out and about to run any errands. I recently got a handicapped parking placard. I thought I wouldn't use it often because as we parked in the past I had thought about getting one and assessed if I would "need" to use it. That assessment was flawed though because it was from the perspective in which parking there wasn't actually an option. I use it a lot. I walk with a cane for a few reasons: my knees; they won't do a knee replacement until I'm in my 60's with the lack of insurance I have. So I'm using what I have wisely and walking with a cane. It's also for my back. My right hip is what I would describe as "soggy" it doesn't hold my weight during a stride. So, the cane helps a lot even though I really dislike it. My skin is soft and thin now. When I look down I don't see my Dad's hands, I see my Grandpa Hope's hands. That's ok by me, he was a great man, but it's a little early. I'm not yet 40. I digress yet again (fibro fog) I'll go get the kids from school around 2:30 and leave again around 5:45 to get Rose from work. We'll get dinner figured out and I'll cook or help cook depending. I'll get Rose off to bed, then the kids, and I'll pace out all the pain and anxiety from the day (even though I do it throughout the day) and exhaust myself around midnight and fall asleep.

That "day" will fluctuate depending on the factors I listed and I have no retreat from my day. I cannot fail my family. I feel horrible as I am no longer the provider for me family, while at the same time I have enormous pride for my wife and how she's blossomed under this. As my body crumples up on me I struggle with depression (fibo add-on), I am unemployed and most likely unemployable, I can't work hard around the house... hell I barely keep house. I manage to taxi my family and remain an emotional support. It's all I have and I give it all.

I'm sharing all of this because I am sick, but I am a human being. I believe we need to open the dark corners, deal with them with the strength of our family. We need to dispel the thought that we should somehow be ashamed of our bodies, of who we are. We desperately need a coming together. I share because it is caring, caring that maybe this will reach someone who needs it on a day they need it. Gifts are given without thought of reciept, or they should be and I believe your very presence is a gift unto the universe for us all to share so make it the best you can give.

Imagine. Everyone, everywhere being open and giving, understanding and nonjudgmental... We have to be the change folks and this is my humble contribution.

The walk into Autum

There is a pale beauty in loss; as it brings those thoughts of cherished people and things into a different perspective. We have the opportunity in those moments to revel one again in the sunlight they bring. Simply recalling a place, time, or people you were with when a string a events occurred does not bring the same warmth, depth or comfort. 

These thoughts are brought to mind today as the cold causes me to bundle up for my morning walk. As I do I guess it's my natural tendency to draw inward. I like to think it's Mother nature tucking us in ever so slowly; into that long walk within. As I bundle and walk my wife is on my mind. I've gotten the coffee made and ready. She's sleeping so soundly, her breath to deep and even, I don't have the heart to wake her. As I'm grabbing her coat, an XL men's corduroy fleece lined number, she wakes up a bit. She checks her alarm and dives back into sleep. So there I am walking up and back the path in the backyard pre-warming her coat because she has to catch the bus today and thinking. I'm thinking of how I can ease the pain of her loss. I wouldn't speak of it in a forum like this if it weren't so relevant to this time of year, how this experience came to me and to how I see the healing process.

Here we are full in the beginning of Autumn, of harvest and growth. It's much easier to see the process of death and life I guess when I think of the way we live with the earth. I don't mean living on the earth I mean living with it, with it's seasons. The Spring is a time of new growth leading into Summer and vitality; hard work which leads to Autumn and the harvest which we store as the cold of Winter sets in.  That can be seen as physically and plainly as the allegory of the grasshopper and the ant; though attaching to firmly to the physical realm. We don't live plain lives though, there are storms and times of abundance and life is the walk through that adventure. Living with the earth means setting our hearts to it's beat as well as you march through life. You can call it metaphysical, scientific or fit it into any religious or spiritual path; which plants it in the file of "truism' for me.

The heart, our emotional realm, cannot be defined in a physical sense. We have so many references to this in our popular culture and world culture. I believe all cultures have a story similar to Romeo and Juliet; of a love which shouldn't be, but I am not nearly well read or traveled enough to make such a claim, yet it is what I believe. I struggle with my physical attachments to love, as I believe we all do. Reading between the lines, or worse; becoming so jaded that the lines blur and you see conspiracy everywhere. When your very existence becomes a ping of echo-location bounced back from those in your life. Love isn't constrained by any physical sense so I wonder why I attach so firmly to it, believe so strongly in it when the signals from all of those lines bring me nothing but pain. If it's a positive message, it has been filtered and I missed actually experiencing it and so I suffer, if it's a negative message I wallow in its energy which I hold out of time in this place where I monitor the messages. Damn!! Life escapes me in this way.

My heart is free and open though, unbound and immaterial. Those I keep there are but the rays of light which they brought to me. They are warm feelings in my chest upon recalling those times which we can recall so clearly because we weren't attached to it but living it. They are the supports of our inner strength when we want to quit. They are our inspiration when we forget what love actually is and believe ourselves imprisoned by our pain. Love is the fiber which the pain cannot break. When the waves of grief pass there will be that light there still, washed by all the tears spilled, clear and warm and bright. It may seem that this light is only shown through hindsight and I'd agree with that. It cost you the tears and that experience to have such a pure memory, such a warmth, a hearth-fire of the soul. 

As we walk into Winter, may we experience every moment of the Autumn. May we experience the cooler weather, jackets, gloves, steaming drinks from mugs, togetherness and the like. May we experience the lengthening of the nights and the dark as well. The thinning of the veil between this world and the spirit world is among the defining characteristics of Autumn, of harvest, to me. It's the spooky time of year naturally, I believe, because what we fear most isn't any ghost or monster or even fear itself, it's the big dark empty void of ourselves which we fear. It's all the missed opportunities born from hesitation, it's the dark and vindictive side which has no form and can't be fought it seems and so much more. It's us, the inside where we hide. It's that place where we could go to think where even god couldn't hear us. That's what I fear because it is what manifests my fears and demons. The yearly visit here for housekeeping is so much easier when I prepare myself for it. I know I come here every year just as I experience the pinnacles of Winter, Spring and Summer as well: it's high time I stop acting all surprised and unawares.

I'm brought here today as I pace back and forth thinking of how to lift the burden from my wife's heart. I want so bad to help her and her family as I know they've been through enough, that they need a break and oh how I wish I had it within me to give. Since I have nothing, I think, and think and walk and walk and all I can come up with is that there is such a pale but rich beauty in loss, though it too can be seen best in hindsight. So I'm left with lending a shoulder or an ear to my wife (and my Brother), being understanding and supportive and saying there is light at the end of the tunnel. May it help in some small way or be of some comfort to hold on; that I believe that the bright and shining beautiful light at the end of the tunnel is the same light which brought you here and is with you always. Have faith and in your sorrow feel her warmth until the sun shines again, as it always does.

With love,

Ryan

It has been said

It has been said that we only use a portion of our brains, and with that we have language and communication. What if we're actually using all of it and what we're expressing to each other is an entire reality of which the common threads are woven into our shared reality. That would leave each person's God, hell & salvation squarely in the hands and soul of the individual giving no credence for acts in their God's name. Then the intent of a person would be in the strength of their character & validated by their actions not some buck to be passed.

We mustn’t be abusive in the pointing out of the abuses against us. Hypocrisy leaches our effect in the world while being the change we wish to see

When all you have left is your love, give that away too